Sunday, 17 March 2013

I'm sitting in front of the computer and I was going to blog about my day, about the last two days. But Ive just finished reading an entry on facebook by a beautiful woman who I met through this crap nightmare of a journey, and I find I cant. She too has a son with ATRT. He was diagnosed last year like Jayden but in April. He sadly relapsed during treatment and is now fighting for his life. I don't even know where to begin.  I wish for her that her story read so differently, that her child had fought the odds and recovered, for he so truly deserves a full life. All children do. To sit here now and write about my last two days just doesn't seem right. Every time I hear of a child relapsing I dont feel right about writing about mine. I feel a certain sense of guilt that my child is well and theres isn't. I know it may sound ridiculous but when you enter this world of childhood cancer I'm pretty damn sure its normal.

I wanted to blog today about taking my boys out for breakfast yesterday and meeting a dear old man at a cafe. But the thought of it saddened me rather than made me smile at the time. He watched me with my sons and after I smiled at him he said "you are very lucky, this is the best time of your life, when your kids are young". Hes right I thought, seeing him on his own at his table eating his breakfast, old as he was and I assumed his wife was no longer alive. Lonely, no doubt, but once wasn't, when he had young children in his home. When laughter filled the rooms in his home and the sound of litttle feet, but now is most likely all quiet. There is no doubt in my mind that he is right, that this is indeed the best time of our lives, when our children are young. Yet for us and so many it would feel like the worst. Instead of my friend enjoying this time with her son she is hurting beyond belief. She will not get to truly enjoy the "best time of her life" with her son and my heart truly breaks for her. Instead this has become the hardest time of her life.

I feel so sad for her and I know it makes it harder for myself knowing others are suffering and feeling for them, but how can I not. I know their story all too well and I know how hard their journey has been. I wish so much I could change it for us all.


Kinesology on Friday got me through the last couple of days but it wont take away the reality of this life. Nothing can. I know that and I knew it wasn't going to work miracles but what it most definitely highlighted to me was the importance of investing time into healing myself, in whatever way I can. This is huge. this life, this journey is so horendous. When you enter the world of childhood cancer, not only do you watch your own child suffer and you fear for their future beyond belief but you also watch others. You befriend other parents and you see their hurt, their pain in their eyes, and you see their childrens pain. We spent most of our lives shielded from this world and not even really knowing it existed and now we live it every day amongst many other parents.

It is without a doubt the hardest journey any parent has to travel with their child and  to do it without some form of help is just not possible. Jayden is with me 24/7, never leaves my side and often wont let anyone do anything for him except me. He wont let dad take him out of the car seat or put him in it. He wont let dad get his cup of tea etc etc. So I know I need to make sure that the time I have with him I am truly making the absolute most of and in that time I am 'present' as I can be. When I'm struggling and really sad its difficult and that's no good for him, its no good for any of the kids. Getting up everyday and putting one foot in front of the other can truly be challenging and some days worse than others. However its how we live now, so we just do it the best way we can.

Jaydens next scan is in April and I'm shitting myself beyond belief, there is no question about that. And as I hear of children relapsing around us I am fearful all the more.
I'm still saying to my self everyday the sentence I did at Kinesology : "I'm loving and present with my children with joy, and what will be will be". But I know I am a long way from truly feeling that. I'm not sure I ever will fully accept what "could be" but I hope that I can come to a place of peace for what is "now".





 

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